The founder of ACT UP fights back after being told he couldn't use his pharmacy of choice.

On November 19, I received a curt letter from Empire BlueCross BlueShield, which has insured me since I worked as a trainee at Columbia Pictures in 1958 or so.

“Our records show that you are getting the medicines(s) listed below from a retail pharmacy. It is important to note that beginning 01/01/2013, your medicine must be filled through our specialty pharmacy, CuraScript … If you stay with your retail pharmacy, the medicine won't be covered.”

Enclosed was a list of most of my anti-HIV and hepatitis B drugs that I am taking. It is a complicated list. Over the years, I’ve had a lot of complicated illnesses. My pharmacist at Bigelow knows me and my list and my doctors well. I rushed over to show the letter to Bruce, who shook his head sadly. “It’s happening all over the place.” Bigelow is the oldest apothecary in America. I asked him, “But why are you being punished, instead of the greedy drug companies? Why am I being punished?” OK, we’ve been here before.

The fun starts when I finally get someone from CuraScript on the phone. I could not believe what she was telling me. In essence she was saying, “You people are abusing the privilege of being insured by us, stocking up on your drugs, whether you need them or not.” “How do you know that?” “Our research has showed us that.”

I asked, “Who exactly do you mean by ‘you people’?” By then she must have sensed this wasn’t going to be an easy one, and said, I guess sensibly, that unless I had some other way to pay for them “you might as well give me your info now so you don’t miss your next doses.”

Then began a quite ridiculous series of easily 40 phone calls, all recorded, all to just let Laurence Kramer or someone who can speak for him know that his paperwork is in the process of being completed. “There is absolutely nothing you have to do to respond to this call.” My nurse practitioner told me she’d phoned in all my “specialty” prescriptions along with the day for their delivery to match the end of the current supplies.

I got a call from a service representative to set up a delivery date. “Now, could you tell me how many pills you have left?” she asked. “You want me to count them all right now? Empty six bottles of pills?” “You have six full bottles of pills?” she said, as if she caught me out in her raptor vice. “But you should know by the last time your insurance paid for it.” This was a new one on her. There was a long silence while she tried to figure out how to handle this one. “You people,” I heard once again.

We settled on December 24 for delivery of “five prescriptions.” I know that more were phoned in, but she mangled the pronunciation of all of them so badly that I decided to see what I was sent. I did inquire if Dr. Fung’s request of not using a generic for Prograf [a drug used to lower the risk of organ rejection] had been honored and she said she had no idea.

So this is what I have to deal with for the rest of my life? I can’t bear thinking of all the trained Bigelow pharmacists being replaced by these brain-dead service representatives all over America.

Taking care of all my sick brothers and sisters, my people indeed.

I had been invited to a party given by [the former head of Empire] Mike Stocker. I wasn’t going to go. I just got out of really grueling surgery a few days ago. Mike Stocker and I have known each other since the early days of HIV when he ran Empire. I was the activist who gained entrance into his office and yelled at him nonstop about what they weren’t doing for us. He told me to sit down. We both learned a lot from each other and have become good friends.

I asked him if he knew that his company, that had once been so grand, was now so hateful. Is this what he wanted to be remembered for? He introduced me to Mark Wagar, Empire’s current president, retiring at the end of the year. They were not unfamiliar with what I was complaining about. CuraScript has not been without personnel problems.

I tried to shame each of them. “But is this what you want the company you ran for so many years to be remembered for? Screwing the pharmacists. Screwing the patients. Punishing us. Bigelow has provided me my meds for over 50 years.”

Why doesn’t anyone fight back? Why do I have to get my meds mail order from people who don’t understand the meds they’re talking about? Also, isn’t there a civil rights violation going on here?

On the way out Mike asked me, “Is what you are asking for no more CuraScript?” I said, “I want Bigelow back.” Leaving, I realized that the passion and fire were still in me. After the operation last week, I doubted I had any left. Spencer Cox’s death didn’t help.

I think all of us who want to choose and use our own dispensers should be free to choose them. You people, indeed.

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